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Setting Families Up for Success: Modeling Shared Decision Making

A parent panel moderated by Erika Goyer. Presented Friday, April 29, 2016 at the National Perinatal Association conference "Multidisciplinary and Collaborative Perinatal Decision Making in the 21st Century" in Houston. www.nationalperinatal.org

Erika Goyer

on 19 May 2016

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Transcript of Setting Families Up for Success: Modeling Shared Decision Making

Modeling Shared Decision Making
mom to W. & E.
mom to E., D., & G.
mom to R.
mom to Q, aunt to S.
Setting Families Up for Success:
a parent panel moderated by Erika Goyer
I had never met the doctor who gave me the challenging information that, "We’ve done all we can do."
I didn’t feel as if she took me seriously when I told her that I wanted to give S. more time on the oscillator even though she was on 100% oxygen.
When this had been the scenario before, she just needed a little extra help and things would eventually turn around.
I wanted to give her at least 24 hours.
I felt like this doctor blew me off.

I stayed with S. most of the day with very little change in her condition. Throughout the day I witnessed the staff talking and whispering about her condition.
Q spent 121 days in the NICU
S. in the NICU
two blastocysts
3 fetuses
his brother
with Dr. Bhutani at discharge
my son
On what would become the worst few days of my life, making the heartbreaking decision to discontinue life support and provide comfort care for our son W. was an experience in which I felt honored, respected, and invited into the conversation by our incredible neonatalogist. By using his expertise, being mindful, being empathic and preventing guilt and shame, he made an otherwise emotionally devastating experience feel at least somewhat manageable.
"You will think crazy things, looking to blame yourselves for what has happened. Let me reassure you that as a neonatalogist, there is no known cause for preterm labor. If there was, we would all be blissfully without a job."
- Dr. Bhutani
(After the shift change at midnight)... The new doctor, Dr. Savani, was so much more compassionate and informative. He was kind enough to repeat the update on her condition once my mother and sister arrived at the hospital. It was at that time we decided that S. had fought a very good fight and it was time to let her go home to be with God... Although Dr. Savani and I only spent a couple of hours with me as S. transitioned to her heavenly home. It’s a connection that is very near and dear to us even 3 years later.
As a mother in the NICU, I was an RN who had practiced for 4 years. Even having worked closely with and sometimes in the NICU, and daily with mothers who had high risk pregnancies (and having that experience myself), I was totally overwhelmed in that moment, and scared. I questioned myself daily.
I wondered if the decisions I was making were the right decisions for my daughter.
Once educated, empowered and encouraged, parents feel more in control, involved in care and engaged as a participant in their infants care in the NICU. They have a greater understanding of what is happening and why, and therefore forge better working relationships with the NICU staff that ultimately result in better outcomes for their baby.
mom and daughter
in the NICU
together today
What I needed as a mother was acknowledgment that we, as parents, were the most important members of the decision-making team. That we needed education, compassion, and support. That we needed to be allowed to make the best decision for our family.
Our first shock came at our 6-week ultrasound when we discovered that both of our transferred embryos had implanted and one had split. This was not something we had prepared ourselves for. We had chosen to transfer 2 embryos because we were not comfortable with a triplet pregnancy.
What would a triplet pregnancy mean for us?
What would our care look like?
What were the risks?
What were our options?
“I would like to say more and more information, but that doesn’t always help…. I know one thing, and I am 100% sure that developing a relationship quickly with a patient is important. Developing trust with a patient is important because they don’t want to hear anything from you if you don’t have that. I think empathizing is extremely important and expressing that, but these are obvious to me, but you have to create a therapeutic relationship….this is what it is all about….I think unrushed, you can’t be rushed and I think maybe whoever talked to you about doing this in the middle of the night or early in the morning, that is okay, you have to talk and make some decisions perhaps, but it is time to back off then and let it settle, so I think re-visiting is important.”
Supporting Parents’ Decision Making Surrounding the Anticipated Birth of Extremely Premature Infant

Kavanaugh, et al, J Perinat Neonatal Nurs. 2009 ; 23(2): 159–170
Dartmouth Hitchcock
Center for Shared Decision Making
The SHARE Approach - AHRQ
Option Grids from Dartmouth

Describe the Shared Decision Making (SDM) model and its value in perinatal care.
Invite parent panelists to recall difficult decisions they made on their babies’ behalf, describe their decision-making process, and reflect upon how this process/model affected the care their children received.
Model how parents and providers can work together to facilitate joint decision making.
Panelists’ stories will exemplify the importance of respectful, family-centered, culturally-appropriate collaboration and communication between families and providers.
Conference participants will have a greater understanding and appreciation of the role of shared decision making in the provision of patient and family-centered care.
The SHARE Approach

- AHRQ’s SHARE Approach is a five-step process for shared decision making that includes exploring and comparing the benefits, harms, and risks of each option through meaningful dialogue about what matters most to the patient.

eek the family's participation.

elp them explore and compare treatment options.

ssess the family's values and preferences.

each a decision with the parents.

valuate your decision together.

Question Builder app at www.ahrq.gov/apps/qb
"Beyond the purview of such evidence-based rationale is the often-overlooked fact that parents and neonatologists each have their
own personal experience
value system
of the medical data that shape their own moral judgments regarding what is in the best interest of the infant. They also
do not have equal positions of power
in this context."
Ethical framework for shared decision making in the neonatal intensive care unit: Communicative ethics
Thierry Daboval MD FRCPC FAAP MS, Sarah Shidler JD PhD
The newborn’s best interest has always been central to decision making, but there is no single, unequivocal definition of the ‘best interest’ of a seriously compromised newborn. Traditionally, in justifying ethically challenging decisions, neonatologists often quote the
Principles of Bioethics
, which are commonly promoted in medical literature and medical education but often limited to four main principles:

- concern for well-being
- “do no harm”
- respect for parental decision-making authority
justice as fairness
- equals ought to be treated equitably
Potential to reduce health disparities
The Potential of Shared Decision Making to Reduce Health Disparities
Jaime S. King, Mark H. Eckman, and Benjamin W. Moulton
Journal of Law, Medicine & Ethics, Spring 2011
Can overcome cultural and social barriers that reduce the effectiveness of communication
A Delicate Subject: The impact of cultural factors on neonatal and perinatal decision making
McCrary, Green, Combs, Quirk
Journal of Neonatal-Perinatal Medicine 7 (2014) 1–12
Promotes evidence-based care
Evidence-based Maternity Care: What it is and what it can acheive
Carol Sakala and Maureen P. Corry
Milbank Memoriel Fund publication 2008
What you do matters.
see the
Visit the
National Perinatal Association
At NPA, we focus on the impacts and effects of perinatal care and policy on families and the healthcare providers who care for them – ensuring their voices are heard.

No matter how you are involved across the spectrum of care for mothers, babies and families the NPA provides programs, services and opportunities to learn and engage.

Learn more about how you can become a member and access what NPA has to offer.

Daboval & Shidler, 2014
full text at www.ncbi.nlm.nih.gov/pmc/articles/PMC4173956/
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